Wednesday, October 26, 2011

From a vision to reality.

Well the last couple days have been quite the whirlwind. It started with a quick email to Ability camp asking when I should submit Ryder's video application for the camp...

Originally we were hoping to take Ryder to the January Mom and Tot camp but when we thought about all the factors, it didn't make sense for us. The main reason being Ontario has crazy winters and there's no way we would risk driving the 15 hours in a potential snow storm to get there. That would mean we would have the extra cost of flights and I would not have a car for the full 5 week stay. The camp is located almost 3 hours away from the major airport in Toronto and twenty minutes away from the closest grocery store. Not having a car and not knowing anyone who lives there makes for some difficult times. Another reason for wanting to wait is winters are pretty tough for me and the thought of being all alone in the middle of no where in an unfamiliar place didn't sound like the best plan.

Then we decided that if they would accept Ryder early, in the 3-6 year old session we could go in June when he would be two and a half and the weather would be nice so I could drive there. That was all fine until I was informed (in the email) no parents are allowed in the 3-6 year old class. The kids go in alone... For those of you that has not experienced Ryder's neediness to me, lets just say its bad. REAL BAD. I can't imagine spending all that money just to have him sit and scream for days on end. They said most kids usually all cry for the first 2 weeks but almost all get use to their parents not being there and do fine. In my opinion when your spending almost $10,000, two weeks is too much time and money to waste screaming till you puke everyday. I was also looking forward to being with him in the class learning along with him so I could continue his therapy at home. So now were back where we started which is January. THIS JANUARY! Like basically 2 months away January!! 68 days away January!! AHHhhhh!

So it started as a vision. A dream really and now, from all your help it's a reality. It feels like it was just yesterday when I stumbled on Ability Camps website. I sat there watching all the video testimonials with tears streaming down my face. I felt like I had finally found some answers, something that could really impact my beautiful sons life. I said to Tyler, I don't care what it takes, I am getting Ryder there. I didn't really know how it would happen but it didn't take long before you all made your support quite clear. YOU all made it happen for us! In four short months you raised $9214. I called today and made the deposit to save our spot. Thank you never seems to feel like enough.

Now with the extra costs of travel and possibly renting a car while I am there we are left a bit short. We need to somehow raise another $2000 to cover the extra expenses. I have no doubt in my mind that we can make this happen. But.... if you've been waiting for the perfect time to make a donation, now would be that time :)

I am nervous, scared, hopeful, excited but most of all thankful for this journey that we are about to take. I look back at my first post in the beginning of July and Ryder could not sit, kneel or crawl. All very important milestones that come so easy to most kids. We have worked with Ryder daily and now four months later and he is doing almost all of that plus more!! :)  I am so excited to see what he can get and learn from Ability Camp!

Thursday, October 20, 2011

Feeding Frustration...

The last couple weeks have been a bit of a struggle. Ryder somehow hurt his Right leg/foot and wouldn't put any weight on his right side for a full week. He wouldn't use his walker or play standing. We had our appointment with the pediatric feeding team, which did not go so well. He has not been sleeping at ALL and caught a cold which luckily didn't last long but was still no fun while it lasted. Also it was Pregnancy and Infant loss awareness day on Oct.15th which always stirs up a lot of buried sadness and grief for me. It's so hard not to think of the "what ifs". What if TTTS never existed and I had two healthy striving little boys..... :(  I miss him so much and there's not a day goes by that I don't envision my life the way it should be.

"Wyatt we miss you every minute of every day but on days like this we miss you even more." 
International Pregnancy and Infant loss Awareness Day Oct.15,2011

Almost everything has settled but we are now dealing with the feeding frustration.

Ryder has never been a good eater, he struggles with texture and extreme flavors. We can't even give him baby Tylenol as he will instantly puke up everything in his belly. He will also gag and puke if something is lumpy or involves chewing and doesn't just dissolve in his mouth. He seems to do okay with crunchy things like rice cakes or crackers but we are very limited on nutritious food that he can eat. He will eat buttered toast, cheese cut in cubes and sometimes he will try cut up fruit. Everything else is crunchy or baby food consistency. We thought he was slowly getting better but he hit a wall then slowly started to get worse again. I was concerned as his little waist is so tiny and he only seems to be growing in length and not gaining any weight. Our O/T suggested she ask for a referral to be put in to the pediatric feeding team at the hospital to see if they could help. The team consists of a Feeding Therapist, Nutritionist, Psychologist and a Speech Pathologist. The night before our appointment Ryder was up all night, and I am not at all exaggerating when I say we all had max 2-3 hours sleep. Our appointment was first thing in the morning as they wanted to watch Ryder eat on an empty tummy. We sat in a room and fed Ryder many different foods while they watched from a one way mirror. After we sat and talked about ideas of new foods and what their concerns were. I am sure you can imagine having four different therapists telling you things can a bit overwhelming for a brain that didn't get any sleep. We left feeling defeated and even more limited on what Ryder can now eat. They no longer want him eating his toast or cut up cheese (which he loves and asks for at almost every meal). They are very concerned about the risk of him choking as it doesn't appear that he is chewing his food and he doesn't know that he needs to push it to the sides to chew after taking the initial bite.  They don't want him eating his baby food that he actually likes and they want me to make individual puree's of all different things and to not mix the flavors. From what I gather our goal is to slowly make the puree's thicker and lumpier until he can eventually just eat a piece of cooked carrot, potato or whatever it may be. I don't think they fully understand how difficult this task is going to be or maybe they do. It's way easier to say it and be on the other end not having to deal with the daily battle of meals. When Ryder first started trying solids I made everything that went into his mouth. I wanted to keep it that way but when you spend hours making baby food and only get a a turned up nose and big mess on the floor it obviously starts to feel like a big waste of time. Right now I am just trying to process everything then I will slowly start to implement their suggestions into Ryder's feeding routine. I personally don't feel like it's something that can just happen over night. On a good note, they were not at all worried about Ryder's weight or growth :)

I'll leave you with a video Ryder and I watch when we need a little inspiration :) 

Tuesday, October 4, 2011

Casts OFF!!

Again we are so blown away by everyone's generosity. Ryder is such a lucky little guy to have you all in his life. We now have a grand total of  $8824 in Ryder's account for Ability Camp!!! Big thanks, hugs and love to Ryder's Nanny Marg who made a very generous donation of over $1100!! And my parents back home who threw a huge garage sale where they made $1580!! Thank you to everyone who helped out and gave donations for the sale. Garage sales are a lot of work and we really appreciate all the time and organizing you guys did to pull off such a successful day.

Here's a smile from Ryder to show his thanks!!

Last week Ryder got his first Casts taken off and new ones put on. They were very happy with his extension from the first set and said the next set would be the last for this round of casting. He did good while getting them off but it was pretty scary for the little guy. He cried a cry I have never heard before, must have been the "I'm scared mom, please make it stop" cry :( Broke my heart. We bought him his own big boy headphones to listen to his Thomas movie but it didn't really work after the first one was cut off.


The second set of Cast were suppose to stay on till this Thursday, then because of some scheduling issues at the hospital they were going to need to stay on till the following Tuesday. I was pretty bummed because I feel like he hasn't had any real fun since he got them on. But Ryder was fine so I guess it would have to do. It was all good until this morning when Tyler noticed some sores starting to form under both casts on the soles of his feet. It looked pretty bad and our P/T agreed that they should come off to prevent any infection. Again he was not very happy about that darn saw but his mood switched fast once his little legs were finally free again!! They were so happy with the results even with having them taken off early. He can now get his feet flat on the floor! This is huge, as before he could only go up on his tip toes. We have already noticed he has so much more stability when standing now :) We are very happy and the casts were definitely worth it.

I really wish I had a video of him before the casts to really show how much of an improvement this is.

Ryder's P/T also made him night splints out of his casts to wear until he gets his made next week. They don't seem to bug him at all :) 

Sleepy boy has had a long day! Good-night :)